Notes from the Real Life of a Long-Term Cancer Survivor

Month: September 2018

I have mixed feelings about sour cream. I mean, I absolutely love it, but it’s high in saturated fat so I should consume it in moderation (I have a family history of heart disease). Glenn doesn’t like it, so I tend to buy a small container, use 2 or 3 tablespoons of its creamy goodness, and then leave the rest to mold in the back of the fridge, buying more the next time I need some for a recipe.

I recently discovered that someone had the positively brilliant idea to put sour cream into a soft, squeezable container-bag-thing so that the contents are easy to dispense decoratively over a pile of nachos or a plate of appetizers, and it stays fresh for an incredibly long time in its sealed pouch of deliciousness.

I stood there beaming a bright smile in the dairy aisle of Zanatto’s Market, filled with wonder at my discovery. What an amazing world we live in — squeezable sour cream!!!!

Wonder has been in short supply. Lately I’ve been in despair over the current political climate, the news about Hurricane Florence’s damage is devastating, I’ve got way too much work on my plate, and I’m worried about various loved ones who are ill or struggling with tough issues.

Needless to say, the squeezable sour cream doesn’t help anyone dealing with the aftermath of a hurricane, and it certainly doesn’t address the problematic Supreme Court nomination/confirmation process. It can’t lessen my work load and it definitely won’t help my aunt recover from her recent back surgery.

But the few moments of wonder that suffused me in the face of this outstanding gastronomic innovation are precious to me. Wonder is excitement and surprise and joy and hope and admiration all at once. Wonder is a full-body experience — my mouth dropped open and then transformed into a wide grin, my eyes shone with pleasure, my lungs expanded as I took a quick breath, energy flowed down my arms and leg.

When wonder comes–for any reason, even something as silly as an improved way to package sour cream–we need to embrace it. We need to stop and pay attention. We need to recognize its power: Wonder is a resource for making it through everyday hassles, personal crises, and natural or political disasters. Wonder is food for our souls.

Wonder is kin to gratitude but it’s more than just appreciation. Wonder evokes a sense that the world is full of possibilities that haven’t been created or discovered yet. Squeezable sour cream reminded me that I don’t know everything, that I often can’t see what’s coming, that life’s uncertainty includes happy, fun, intriguing, useful, marvelous things, not just the bad stuff.

Not everyone I told about this experience with has shared my sense of wonder. In fact, most people have laughed, not unkindly, in the face of my exuberance over squeezable sour cream. But that’s okay.

I truly value this aspect of myself. I am thrilled that despite all the pain and the side effects of the pain meds and the hassle of my prosthesis and the stress and worry, I still feel wonder over simple things. And that wonder fills my soul so that I have sustenance to cope with whatever life throws my way.

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I just returned from a trip back east. For most of the four days, we enjoyed gorgeous, sunny weather, but one afternoon we had a storm.

This thunderstorm rolled rapidly across the bright blue sky, transforming the scattered, puffy, white clouds into a bank of dark gray in a few moments. The sudden decrease in atmospheric pressure (that’s the thing measured by barometers) that accompanied the storm sparked a sizable bout of phantom pain in my missing leg.

I wasn’t actually surprised; I have told a couple of pain doctors and other amputees that my phantom pain gets worse when it’s storming, and they all agreed that this weird phenomena is quite common among amputees. To my knowledge, no scientific evidence supports our claim, but anecdotal evidence abounds.

And during this thunderstorm, the anecdotal evidence was plentiful — that is, my missing limb hurt a lot. My traveling companion, one of my aunts, was compassionate and eager to help. Unfortunately, all I could do was wait it out, so I tried to distract myself by reading, answering some email, and then talking with my aunt.

My aunt looked surprised by my response, and it occurred to me that I wasn’t acting like I was in pain. I mean, I wasn’t giving off any cues that the pain continued to be a problem.

I’m not a martyr; I often let people know I am in pain by gasping when it spikes or groaning or even crying if it gets bad enough. On the other hand, I’m also pretty used to being in pain, and I don’t always bother to express the pain on my face or body if it isn’t too bad, particularly if I’m teaching or in a meeting or giving a presentation at a conference or really enjoying a conversation with a friend. It’s not that I don’t feel the pain in these instances; it is that I don’t need to perform feeling the pain.

I think that the “rate your pain on a scale of 1 to 10” is a fairly limited approach to pain assessment, but it’s all I’ve got. On a scale where 1 is a paper cut and 10 is when (true story) the recovery room nurse shuts off your morphine drip after major orthopedic surgery because your breathing is so shallow they are afraid you will stop breathing entirely, then this phantom pain caused by the storm ranged from about a 4 to a 5. It was definitely noticeable, couldn’t nap through it, exhausting after awhile but not incapacitating, like bad menstrual cramps or walking home on a definitely-twisted-but-not-really-sprained ankle.

So the pain I felt was considerable, but at the same time, it did not necessitate an outward performance. Not that my aunt would doubt me, but it was reasonable to assume that the pain had passed since I was sitting there without grimacing or gasping or yanking my prosthesis off to massage my leglet. A dear friend who visited earlier this summer told me that she had not realized that I was still dealing with phantom pain all these years later, until she read one of my earlier posts.

It occurred to me that involuntary expressions of pain are not my choice; when the pain gets bad enough, my body performs it whether I want to or not. And when pain first begins anew, I often frown and sigh or gasp, even if the severity remains on the lower half of the scale, signaling pain’s reappearance. But in the middle of the scale, I have some discretion, some choice over the performance.

My recognition of choice in the matter triggered my OCD-ish tendencies. Am I being dishonest if I hide the pain? Am I asking for pity if I give cues that aren’t completely necessary or involuntary? Am I just feeling sorry for myself if I let others know I am in pain? Is it possible that it helps people to be patient with me if I give them occasional reminders that I am often in pain? If I let people know I am in pain too often, will that make them not want to be around me–will they think I’m negative, whiny, needy? Will they think I’m strong or just lousy at managing a chronic pain condition?

I never pretend to be pain, but how to perform the degree of pain I experience, and whether to perform it at all, are often (but not always) a choice. I find that both comforting and a burden.